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3 keys for managing an autoimmune disease and your career

10/1/2020

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When you're diagnosed with an autoimmune disease, or even at the first sight of any such symptoms, your schedule quickly fills up. (And your time and energy, too.) Between phone calls with primary care providers and insurance companies... to actual doctor appointments and tests... to follow ups and treatment plans... this sector of your life now needs a lot of your attention.

And any time leftover?

That often goes to naps on the couch or staying in bed a bit longer... because you're often exhausted, in pain, or massively uncomfortable.

Before I was diagnosed with an autoimmune disease at 14, I spent all night wide awake (insomnia), all day half-asleep at my desk (subsequent exhaustion), and any "free" time was spent at a doctor's office or watching my favorite episode of Friends for the 14th time (survival). 

You see, managing an autoimmune disease can quickly feel like a full-time job all by itself. (One that you never, ever applied for.) Even so, many people still need to work on top of that and maybe even want to chase a dream, write a book, or start a business at some point, too. The question becomes... How? What happens? Is it possible to manage an autoimmune disease and your career?
Growing up, my parents knew something was wrong when I was exhausted visiting the happiest place on Earth. At the age of 14, food wasn't appealing (even fried park food!), attractions weren't fun, and I spent one evening sleeping in bed instead of exploring the magic of Disney World outside my front door.

So, as soon as we got home, I spent months in and out of doctors' offices, getting tested and working with one specialist after another. Turns out, I had developed a rare autoimmune disease named Takayasu's arteritis (and later one named seronegative rheumatoid arthritis). I was immediately put on a drug that helped alleviate my symptoms, including chest pain, back pain, weakened pulse, numbing, insomnia, and extreme fatigue.

Fast forward a few years, after exploring quite a few medications, going to college, and even swimming competitively, I started working as a Systems Engineer for the Navy. Despite having best benefits available to anyone outside of Congress (a very important stat when you're dealing with autoimmune disease), in March of 2015, I resigned my position and, in April of 2015, I took a $75,000 pay cut to become a full-time entrepreneur.

I have a lot more flexibility running my own business, but I also have a lot more stress.
 
So when, about 3 years into my self-employment, I started working with my doctor to taper off medication, I knew I would have to find a way to successfully manage my health goals (remission) with my career goals (a thriving company). Even more, this attempt off medication was my first attempt in over 9 years. It was something I was really excited about and something I'd been dreaming about ever since I was first diagnosed.  

This intersection of my health and career goals is what first led me to ask whether or not I had to choose. I didn’t want to think that I could EITHER optimize my body for healing OR grow a new business. I wanted to find an "and" in there somewhere.

These are pieces of my story that led to a desire for both health and career... and they may or may not look anything like yours.

But wherever you are -- whether you're trying to chase a dream and optimize your body for healing or you're trying to manage your symptoms and get through a day of work or school without feeling even worse  -- here are a few things that may help. 

3 KEYS TO DEALING WITH AN AUTOIMMUNE DISEASE AND YOUR CAREER
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1. Make conscious trade-offs.

For a while, I thought I was going to have to make a choice between work and health. That I could only have one or the other. I could only have a successful career if I was willing to "sacrifice" my health goals... or I could only have a thriving body if I was willing to take it easy when it came to my work.

In reality, I had to make trade-offs. 

Once I started looking at trade-offs within my health, a topic first taught to me by my coach Shauna VanBogart, things started to click. I could be both an autoimmune disease warrior fighting daily for her chance at natural healing and remission AND an entrepreneur working to leave a legacy bigger than herself. 

...So long as I was willing to acknowledge and accept the trade-offs.

If I'm not willing to trade-off my goals at work… and I'm not willing to trade-off my health management practices... then what AM I willing to trade? The amount of time I spend working? The amount of energy I give certain tasks? Sure, but how?

By trading off perfection, expectations, or outdated standards. 

I used to spend probably 50% (or more) of my time making my work 15% (or less) better. In other words, if I let go of the need for perfection before launching, sending an email, writing a blog post, sharing on social… then I could cut my work time drastically. So that, with the extra time, I can take care of myself, go on long walks, make phone calls to providers, and rest.

Now, I know that lot of people talk about letting go of perfection.

I've certainly heard “done is better than perfect” or “surrender to perfection” or simply “let it go”. But, it was hard to release this part of my personality until I knew WHY I was doing so.

After all, perfection itself is there to keep me safe. To limit my chances of rejection or failure or judgment. And that’s really, really helpful because those things can be painful. It took a conscious decision that what I was getting from perfection (that protection) was less helpful than what I losing (the chance to have time and energy for both health and career goals). 

I had to decide that my health and my work were more important than the illusion of safety that perfection seemed to give. 

Here are some other trade-offs we might need to make:
  • Doing it all ourself. 
  • Traditional weekends. 
  • The hustle. 

We don't always know when we're going to wake up feeling inspired versus when we're going to wake up in a flare. Trust yourself to know when to push and when to rest. If you feel inspired on a weekend, go with it. If you need to rest on a weekday, trust yourself. I know this is much easier to follow if you're working for yourself, but consider a conversation with your employer about flexible work hours, too. Communication goes a long way when navigating health and work and it's important we break the stereotypes, stigma, and shame that surrounds illness. 

It's okay to ask for help and it's okay to do things different.


2. Get clear on what's *really* required.

It's easy to think #allthethings are required to have what we want. Meaning, we've been taught (much in part to the Internet and ease of access to information) that we need to do A LOT of things if we want to actually feel better AND create massive success through our work.

In fact, if you took an inventory of everything you're currently doing to manage your health plus everything you think you should be doing on top of those tasks... it would probably be a pretty long list.

And then, if you made another list of everything you're currently doing at your job plus everything you think you should be doing to get where you *really* want to be, you've probably got a second really long list. 

Well, if you want to have both your health and your work, then I guess you better add those two lists together and start feeling totally and completely overwhelmed, right?

Most of us think we have to do exactly 8573920 perfect things in order to feel better.

We have to eat the perfectly clean diet.
We have to exercise daily.
We have to meditate twice a day.
We have to take our vitamins and supplements.
We have to drink a lot of water.
We have to spend time in nature.
We have to get at least 8 hours of sleep each night (though 9-10 would be better).
We have to spend time with friends and family...

... and the list goes on and on.

This would be a long list EVEN IF these tasks were easy. But, let's be honest, these tasks don't happen without their own list of subtasks, right? Meaning, to eat the perfectly clean diet you have to meal prep, go to the grocery store, cook everything from scratch, etc. 

For many of us, the list of "currently doing" and "should be doing" to take care of our bodies is exhausting. So that, when you add on top what you need to do for your career AND what you need to do for any other responsibilities in your life, we're exhausted before we've even left the station. 

It's frankly not feasible to be the perfect employee, mom, daughter, wife, friend, sister, and patient... and get everything you actually want.

At least not with all of the requirements we've currently attached to those roles and our desires.

If you want to manage your health and your career, consider looking at what you've consciously or subconsciously decided must be required to have what you want.

Is your list true?
Is each bullet on your list actually required for you to get where you want to go?
Is there anything you can cross off from your list?
Is there a different, more accessible way to have what you want? 

If this is resonating with you, I invite you to join my free Facebook Group, Autoimmune Well with Kel. There, I recommend watching one livestream in particular (go to the "videos" tab in the group) called: "The most important Q to ask yourself if you want to feel better". While I'm talking about health in this video, you can apply the same approach to your career as well. 

3. Give yourself a whole bunch of grace.

We don't have to choose between our health and our career. Work dreams and health dreams can coexist. I’ve experienced it. But the thing we sometimes forget is... We’ve got an extra ball in the air. We have another factor to consider. There’s another variable for us to take into account.

Stress plays a role in autoimmune disease and illness... just like rest and joy play a role in health and well-being. While we can get where we want to go through our work, we do still need respect our bodies along the way.

It's okay if our path takes a little longer.
It's okay if we hit milestones a little bit slower.
It's okay to have uncomfortable conversations with coworkers or bosses.
It's okay if we need to take time off or request a flexible schedule.


While I was working as a systems engineer, I was on Remicade for treatment. This was an infusion, delivered at an infusion center for about 3 hours, that I was given every 4 weeks. The infusion center I went to was 45 minutes from my house and about an hour from my work. 
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I know shame and judgment can easily be attached to illness, but it shouldn't have to be. These were the cards we were dealt and the experience we get to have. Instead of letting our boss, coworkers, or clients make assumptions about what we're doing taking time off each month for a Remicade infusion (as an example), what if we shared a bit of our journey instead? 


I know it’s hard to optimize your body for healing in a world that prioritizes doing and checked tasks over being and sitting still. 

It’s hard to optimize your body for healing in a world that doesn’t stop talking, where information is always at our fingertips, and comparison has never been easier to find. We can navigate these waters just a bit more easily by giving ourselves grace, remembering that trade-offs exist, and being willing to question what we believe is required to have what we want.

I'd love to know: What helps YOU manage an autoimmune disease and a career?


2 Comments
Pam link
8/16/2018 10:40:01 am

I discovered this post a few days ago and I have returned to re-read it every day since. Thank you for sharing your thoughts on navigating everyday life while managing an autoimmune disease. It’s something I am faced with constantly.

As an entrepreneur I feel inspired and excited more often than when I worked as an employee. I am a branding specialist and spend a lot of creative energy on client projects. The adrenaline that comes with creativity and the typical stressors of owning my own business tend to really drain me. On the other hand, my situation allows the option of working the hours and days when my health isn’t taking priority. I feel like every day I struggle with the decision of where to spend my limited energy. I am a wife and mother, and therefore often feel the need to push through for my family and hope that I’ll somehow be able to manage to keep from crashing with fatigue or a flare at an inopportune time.

Some days I wonder if the struggle of juggling all the various thoughts is a contributing factor! I definitely feel less alone after reading your post.

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Kelly link
5/13/2019 11:10:50 am

Hi Pam! Thank you so much for your comment! (I apologize for the super delay in my response... I truly did not realize there were comments waiting for my approval for a very long time 🤦‍♀️) I am so glad this post resonated with you... it's so nice to know I'm not alone in this navigation either! I am SO with you on the drain that comes from trying to decide where to spend our available energy. I definitely think the juggling of thoughts contributes for me! Again, thanks so much for sharing, Pam!

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